Related Research Articles
Yang Huanming is a Chinese biologist, businessman and one of China's leading genetics researchers. He is Chairman and co-founder of the Beijing Genomics Institute, formerly of the Chinese Academy of Sciences. He was elected as member of the Chinese Academy of Sciences in 2007, a foreign academician of Indian National Science Academy in 2009, a member of the German National Academy of Sciences in 2012, and foreign associate of the US National Academy of Science in 2014.
The National Human Genome Research Institute (NHGRI) is an institute of the National Institutes of Health, located in Bethesda, Maryland.
Bartha Maria Knoppers, OC OQ is a Canadian law Professor and an expert on the ethical aspects of genetics, genomics and biotechnology.
Genetic discrimination occurs when people treat others differently because they have or are perceived to have a gene mutation(s) that causes or increases the risk of an inherited disorder. It may also refer to any and all discrimination based on the genotype of a person rather than their individual merits, including that related to race, although the latter would be more appropriately included under racial discrimination. Some legal scholars have argued for a more precise and broader definition of genetic discrimination: "Genetic discrimination should be defined as when an individual is subjected to negative treatment, not as a result of the individual's physical manifestation of disease or disability, but solely because of the individual's genetic composition." Genetic Discrimination is considered to have its foundations in genetic determinism and genetic essentialism, and is based on the concept of genism, i.e. distinctive human characteristics and capacities are determined by genes.
Gregory Stock is an American biophysicist, best-selling author, biotech entrepreneur, and the former director of the Program on Medicine, Technology and Society at UCLA’s School of Medicine. His interests lie in the scientific and evolutionary as well as ethical, social and political implications of today's revolutions in the life sciences and in information technology and computers.
The Hastings Center is an independent, nonpartisan bioethics research institute and think tank based in Garrison, New York. It was instrumental in establishing the field of bioethics and is among the most prestigious bioethics and health policy institutes in the world.
The Human Genome Project (HGP) was an international scientific research project with the goal of determining the base pairs that make up human DNA, and of identifying, mapping and sequencing all of the genes of the human genome from both a physical and a functional standpoint. It started in 1990 and was completed in 2003. It remains the world's largest collaborative biological project. Planning for the project started after it was adopted in 1984 by the US government, and it officially launched in 1990. It was declared complete on April 14, 2003, and included about 92% of the genome. Level "complete genome" was achieved in May 2021, with a remaining only 0.3% bases covered by potential issues. The final gapless assembly was finished in January 2022.
Nikolas Rose is a British sociologist and social theorist. He is Distinguished Honorary Professor at the Research School of Social Sciences, in the College of Arts and Social Sciences at the Australian National University and Honorary Professor at the Institute of Advanced Studies at University College London. From January 2012 to until his retirement in April 2021 he was Professor of Sociology in the Department of Global Health and Social Medicine at King's College London, having joined King's to found this new Department. He was the Co-Founder and Co-Director of King's ESRC Centre for Society and Mental Health. Before moving to King's College London, he was the James Martin White Professor of Sociology at the London School of Economics, director and founder of LSE's BIOS Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society from 2002 to 2011, and Head of the LSE Department of Sociology (2002–2006). He was previously Professor of Sociology at Goldsmiths, University of London, where he was Head of the Department of Sociology, Pro-Warden for Research and Head of the Goldsmiths Centre for Urban and Community Research and Director of a major evaluation of urban regeneration in South East London. He is a Fellow of the British Academy, the Royal Society of Arts and the Academy of Social Sciences, and a Fellow of the Royal Danish Academy of Science and Letters. He holds honorary doctorates from the University of Sussex, England, and Aarhus University, Denmark.
The Genome-based Research and Population Health International Network (GRaPH-Int) is an international collaboration of experts and researchers focused in the area of population health. The principal goal of the network is to promote the translation of genome-based science and technology into improvements in population health.
The Institute for Science and Society (ISS) is an international centre of research in Science and Technology Studies located at the University of Nottingham in England. Professor Dimitris Papadopoulos is the current director of the institute.
The Centre of Genomics and Policy is affiliated with McGill University and the Genome Innovation Centre Canada. The Centre was launched to respond to the urgent need for informed public policy and analyses on socio-ethical issues related to human genetics research at the international, national, and provincial levels. Its website provides policy makers and the public access to policy statements concerning genetic research.
P3G (Public Population Project in Genomicsand Society) is a not-for-profit international consortium dedicated to facilitating collaboration between researchers and biobanks working in the area of human population genomics. P3G is member-based and composed of experts from the different disciplines in the areas of and related to genomics, including epidemiology, law, ethics, technology, biomolecular science, etc. P3G and its members are committed to a philosophy of information sharing with the goal of supporting researchers working in areas that will improve the health of people around the world.
The Personal Genetics Education Project (pgEd) aims to engage and inform a worldwide audience about the benefits of knowing one's genome as well as the ethical, legal and social issues (ELSI) and dimensions of personal genetics. pgEd was founded in 2006, is housed in the Department of Genetics at Harvard Medical School and is directed by Ting Wu, a professor in that department. It employs a variety of strategies for reaching general audiences, including generating online curricular materials, leading discussions in classrooms, workshops, and conferences, developing a mobile educational game (Map-Ed), holding an annual conference geared toward accelerating awareness (GETed), and working with the world of entertainment to improve accuracy and outreach.
Responsible Research and Innovation (RRI) is a term used by the European Union's Framework Programmes to describe scientific research and technological development processes that take into account effects and potential impacts on the environment and society. It gained visibility around the year 2010, arising from predecessors including "ELSA" studies prompted by the Human Genome Project. Various slightly different definitions of RRI emerged, but all of them agree that societal challenges should be a primary focus of scientific research, and moreover they agree upon the methods by which that goal should be achieved. RRI involves holding research to high ethical standards, ensuring gender equality in the scientific community, investing policy-makers with the responsibility to avoid harmful effects of innovation, engaging the communities affected by innovation and ensuring that they have the knowledge necessary to understand the implications by furthering science education and Open Access. Organizations that adopted the RRI terminology include the Engineering and Physical Sciences Research Council.
Genome Canada is a non-profit organization that aims to use genomics-based technologies to improve the lives of Canadians. It is funded by the Government of Canada. Genome Canada provides large-scale investments that develop new technologies, connect the public sector with private industry, and create solutions to problems of national interest, such as health, sustainable resources, the environment, and energy.
Eric M. Meslin PhD is a Canadian-American philosopher-bioethicist and current President and CEO of the Council of Canadian Academies (CCA).
Medical genetic ethics is a field in which the ethics of medical genetics is evaluated. Like the other field of medicine, medical genetics also face ethical issues.
Charmaine DM Royal is an American geneticist and Associate Professor at the Institute for Genome Sciences & Policy and the Department of African and African American Studies at Duke University. She studies the intersections of race, ethnicity, ancestry genetics, and health, especially as they pertain to historically marginalized and underrepresented groups in genetic and genomic research; and genomics and global health. Her major interest is in addressing root causes and implementing sustainable solutions regarding problems of race and racism in research, healthcare, and society. Royal is a Human Heredity and Health in Africa (H3Africa) Independent Expert Committee (IEC) member appointed by the National Institutes of Health (NIH) and is a 2020 Ida Cordelia Beam Distinguished Visiting Professor at the University of Iowa.
Vardit Ravitsky is a bioethicist, researcher, and author. She is president and CEO of The Hastings Center, a full professor at the University of Montreal, and a senior lecturer on Global Health and Social Medicine at Harvard Medical School. She is immediate-past president and current vice-president of the International Association of Bioethics, and the director of Ethics and Health at the Center for Research on Ethics. She is a Fellow of the Pierre Elliott Trudeau Foundation, where she chaired the COVID-19 Impact Committee. She is also Fellow of The Hastings Center and of the Canadian Academy of Health Sciences.
Wylie Burke is a Professor Emerita and former Chair of the Department of Bioethics and Humanities at the University of Washington and a founding co-director of the Northwest-Alaska Pharmacogenomics Research Network, which partners with underserved populations in the Pacific Northwest and Alaska.
References
- ↑ Cook-Deegan, R. 1994/1995. The gene wars: science, politics and the human genome. New York/London: Norton
- ↑ "Genome Canada - Welcome to Genome Canada's GE3LS Page". Archived from the original on 2015-04-21. Retrieved 2015-05-21.
- ↑ "Research and innovation".
- ↑ Yoshizawa G. et al (2014) ELSI practices in genomic research in East Asia: implications.... for research collaboration and public participation. Genome Medicine 2014, 6:39 doi:10.1186/gm556
- ↑ Chadwick R and Zwart H (2013) Editorial: From ELSA to responsible research and Promisomics. Life Sciences, Society and Policy 2013, 9:3
- ↑ Zwart H., Nelis A. (2009) What is ELSA genomics? Science and Society Series on convergence research. EMBO Reports 10 (6), 1-5.
- ↑ Yesley M.S. (2005) What’s ELSI got to do with it? Bioethics and the human genome project. New Genetics and Society 27: 1–6, p. 4)
- ↑ Zwart H., Landeweerd L., Van Rooij A. (2014). Adapt or perish? Assessing the recent shift in the European research funding arena from ‘ELSA’ to ‘RRI’. Life Sciences, Society and Policy. 10:11 (14 May 2014). doi:10.1186/s40504-014-0011-x.